I hope this might be helpful to anyone setting out on a similar journey to my own (tonsillar cancer, TORS removal of right tonsil with neck dissection followed by 30 fractions of R/T and concurrent Cisplatin x1 and Carboplatin x4.) Treatment ended on 2nd Jan 2021. All undertaken by an incredible team during the Covid crisis.
This can seem a never ending rollercoaster of a journey with its ups and downs, and even seemingly going backwards at times, but it does improve.
Well, it’s now 7 weeks since I finished treatment and things are definitely improving, albeit veeeery sloooowly. I had a good birthday on Wednesday and enjoyed very slimy tagliatelle with seafood and lots of sauce followed by THE most amazing and calorie-laden sherry trifle. My throat suffered a slight setback afterwards but it was well worth it!
The ulceration around my excision site persists and got me down a bit later in the week. However Dani, Hazel, Linda and Trev gave me a talking to and I felt much better afterwards. Thanks chaps.
I’ve reduced pain relief to paracetamol four times a day with the odd ibuprofen thrown in if things flare up. I’ve now stopped MST altogether. I was warned by my doc that painkillers could lessen the pain but not eliminate it, so the remaining soreness I am prepared put up with especially as it’s now tolerable rather than debilitating. When I look back even to just a couple of weeks ago there’s been a huge improvement, even though day to day progress has sometimes seemed to be almost static.
The pesky lymphodema beneath my chin still wibbles and wobbles about and shows little sign of shifting. I’ve found some drainage exercises to do (thanks Dani) so am religiously trying to stroke it away several times a day. One of the many drawbacks of Covid is not being able to attend a lymphodema clinic. Hey ho. Needs must, and it’s a very small price to pay.
So overall at the end of week 7 post treatment I’m cautiously happy. The inside of my mouth and throat seems to change a little daily, with the odd little lumps and sores appearing and then disappearing. But my eating is getting better and my sleeping is improving, despite the ongoing dry mouth at night.
The sun is out, the birds are singing, the heating is no longer on full blast and I’m cautiously optimistic that I can see some light at the end of the tunnel.
The feeding tube was discussed with me, but i was dead set against it and that was part of what forced me to get the supplements down my neck 
No cancer recovery is easy in my mind mark, you are doing fab.
Hi Trev .....just out of sheer nosiness why were you dead set against having a feeding tube?
Folk seem to be quite polarised about this. When I was diagnosed I said to my consultant "I don't care what you do to me but can you fix it? I questioned the need for one when I signed the consent form for treatment but he said he was going to "really fry the back of my throat" so I just never gave it another thought.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Thanks Trev. I don’t think we get enough accurate information from our support teams or maybe it’s just not knowing the right questions to ask. My dieticians really held me to ransom about losing weight and they were right.The better you are nutritionally the quicker you heal which I can understand. I had a plethora of mouth jaw and throat exercises to do after my NG tube went in and I nobody ever told me I would lose the ability to swallow. I guess some folk have problems with swallowing with strictures and scar tissue no matter what happens.
I'm so pleased you are recovering so well
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
We have both done that mark!
About 2 or 3 months ago i first started eating proper food again, and i had a mad weekend, i had TWO big steak pies with roast potatoes on the friday, a chinese curry takeaway with rice and chips on the saturday, and on the sunday ---- i had roast pork with loads of crackling - followed by scratchings in the evening and 2 pints of beer
I had ulcers and a scratchy throat for about a week afterwards
Definitely baby steps are best.
admittedly with the help of an incredibly thick arran jumper
Ha ha. Hazel and I used to stuff phones and keys in our pockets and wear our heaviest shoes.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
